Back on Blinatumomab 
Today I was readmitted to Simon Cancer Center to restart Blinatumomab.  As you may recall, I started on 28 mcg/day last Wednesday and then proceeded to go a bit loopy.  Today we are starting at 9 mcg/day to hopefully ease me back into the med.  Tomorrow we will go up to 28 mcg/day and I will continue at that dose until Tuesday the 8th.  On the 8th I will stop taking Blinatumomab.  But Rob, you say.  Isn’t Blinatumomab a 28 day cycle, you say?  Why yes it is, astute reader of Rob.  It has been decided to stop the Blinatumomab 2 weeks prior to the start of my SCT so that the antibodies will clear out of my system.  I will only get Blinatumomab for 7 days, but both Dr. Cripe and I are of the opinion that some cancer killing med is better than no cancer killing med.  So we’ll let Blinatumomab run for a week to seek and destroy any lingering leukemia cells it can find.  Then we’ll use high dose chemo and radiation to make sure we’ve killed everything.  That’s what I call the old one-two.

Lumbar Punctures Stick With You
I wrote about the lumbar puncture I had last week and the side effects I was having.  Today is the first day I’ve felt 100%.  Sunday I drove to Starbucks.  I didn’t think much of it, since I wasn’t on Blinatumomab and the mental issue had cleared.  However, part way through I knew I was in trouble.  I was too close to Starbucks to turn back, as I started getting a headache, felt like I could puke and was sweating profusely.  I kept thinking I might have to just pull over and lay in the van for a while.  Thankfully I made it home without issue.  And thankfully lumbar punctures are a thing of the past.

Dr. Nelson
Lindsey and I met with Dr. Nelson on Monday.  He is the transplant physician.  He’s very nice, very smart, albeit not a social butterfly.  Granted, with something as complex as SCT, you want the guy who’s mumbling in the corner solving a Rubik’s cube with one hand while he white boards the solution to some insane problem with the other.  I would love to listen in on a conversation with Dr. Nelson and one of his SCT peers.  But absent that, I just try to keep up with what he’s telling me in the exam room.  He’s done some research into Blinatumomab and antibody levels and some other things I didn’t quite follow (the car ride in with the LP side effects didn’t help).  The details aren’t important thankfully, because it would be impossible to relay them.  The important thing is Dr. Nelson understands what is going on and he gets a kick out of researching Blinatumomab and SCT.  The next time I will see him is when I’m admitted on 9/22.

I Still Have Leukemia
That probably sounds counter intuitive since I am in remission, however it is true on a certain level.  While I do not have active leukemia (> 5% blasts in the bone marrow), I still have leukemia cells hiding out in my body (think reasoning behind testicle boost).  The fact is leukemia is a very aggressive disease and hard to cure.  Only 40% of people diagnosed with leukemia survive long term.  That is why it’s important to do this short cycle of Blinatumomab and continue with SCT.  Anything you can do to suppress and kill leukemia cells is something you should do.  With SCT,  the hope/idea/plan is that the high dose of chemotherapy will help kill the leukemia cells that are hiding out, and my new immune system (which comes from the donor) will recognize any remaining leukemia cells as foreign and attack them.  It’s weird to think there are cells hiding out in my body, but it’s not really something I’m going to dwell on.  I’m in remission and that is all that matters.

Disability
So Principal Life & Disability is on my short list.  Actually they are on another list that begins with “S”, but I’m trying to keep this PG.  I’m still waiting on approval of my Long Term Disability even though I asked to start the process about 5 weeks ago.  My STD is over on 9/10, so I’m a little anxious.  I’ve called my rep multiple times over the past 10 days and haven’t heard back.  I think I might know why though.  I’m pretty sure I offended him.  You see, insurance companies love paperwork and I had to fill out multiple pages for my LTD.  One set of papers was to assess my ability to do another job while I’m being treated (aka, reasons to not pay me or pay me less).  Now, I know this form was designed to be filled out by anyone/everyone, so I shouldn’t complain.  However by the 7th page of answering questions about my computer skills, typing ability and likes/dislikes, I was a little tired.  So when I got to the question that said “Is there any other line of work you’ve always wanted to do?” I thought long and hard and got a bit sarcastic.  For the question about my dream job.  The job I’ve always wanted.  The job that will end all jobs…I put Disability Claims Analyst.  Maybe I took it a bit too far.

Blinatumowhatever
There are a select few of you who can pronounce the drug.  There are also a few of you who are working to pronounce it.  And of course there are many of you who’ve just plain given up.  As a last-ditch effort, I thought I’d give you a video you can use to learn how to pronounce Blinatumomab.  Natalie learned how to say it during my first cycle.  The other day she just casually used it in conversation.  So if a 4-year-old can not only pronounce it but remember the pronunciation a few weeks later, you at least have a shot of getting a syllable or two right.

A Duck Dynasty Prayer
Another round.  A final round.  Thank you again that treatments are available for b-cell ALL.  I pray for treatments this effective for all types of cancers.  That those praying for a miracle would get one, or maybe two.  We all have things that ail us and we don’t know when tragedy will strike.  Today let me concentrate on the things I have to be thankful for and not think about the things out of my control.  Let me focus on the good of God and not the troubles of man.  Let me dwell on the victory in Christ and not the short term losses in the world.  I pray that I can focus on what you’ve called me to do on earth and let the rest just be.  Thank you for another day.

Double Your Pleasure, Double Your Rob
I had a bit more to say than would fit in the last post.  I try to keep them around 1,000 words but the last one was getting away from me.  So you get bonus Rob tonight 🙂

Don’t Move I’m Shooting
So one of our readers asked how long radiation lasts and how long I need to stay still.  Good question.  (Another reader pointed out that she named her son after my right testicle, Harry.  Flattering, but a little awkward). The actual radiation part will be 12-13 minutes.  They told me that I don’t get radiation for a solid 12-13 minutes.  The machine takes some short breaks in there, so they’ll come in 3-4 minute chunks. I guess they don’t want it to overheat and cause another Chernobyl.

As far as staying still, I have to do so between the time they take an X-ray and the end of radiation.  So they get me all set up and situated in my bean bag mattress.  They’ll take measurements to make sure I’m in the EXACT place I need to be.  Then they’ll take an X-ray.  This X-ray is to ensure that the blocks for my lungs are in the right place and I won’t get radiation to my lungs.  If the placement of the blocks is off, they’ll move me and take another X-ray.  If the placement of the blocks is on, then everyone will leave the room and close a very thick door so they don’t get any of the stuff I’m about to be exposed to.  The x-ray takes 5 minutes to come back (they’re a cute group and still use actual film instead of a digital x-ray).  So if I have to wait 5 minutes for the X-ray and the radiation takes 13, let’s just round up to 20 minutes of stillness.  I just know I’m going to get a bad itch on my nose…

Farewell Rob 
I love the nurses on 3 East.  I wouldn’t dare try to name the great nurses I’ve had, since I’d surely miss a few.  However, one bought me Ice Cream and that is a sure way to get mentioned on my blog.  Lisa works nights and is fluent in sarcasm as well so we’ve had a lot of good times.  During my last stay (which we both thought would be my absolute last stay on the unit) she covertly put my Cipro in my trazadone cup so I wouldn’t take it with my night meds(you have to have been REALLY paying attention to understand this*).  Last time around Lisa and I had been talking about favorite ice cream flavors.  Mine is Cookies N Cream.  So as a farewell gift to me, Lisa went downstairs to the cafeteria where they have a Ritter’s freezer and bought some Cookies N Cream ice cream for me.  It was delish and especially nice coming from someone I bonded so well with.  Thank you Lisa for your farewell gift!

Farewell Lisa 
I was a little embarrassed  because I hadn’t gotten Lisa anything.  I mean, I did put her name in my neuro check, but I also wrote Sydney’s name and the ladies want something special.  I know Lisa is a great nurse and great nurses love challenges.  So for Lisa’s farewell, I woke up with a blood and blinatumomab puddle on my mattess complete with blood dripping from my IV line.  I pressed my nurse call button and said my IV line was leaking and I needed help.  One lonely tech came through the door and I immediately said “You’re gonna need more people.”  Right behind her was Lisa ready to save the day.  Granted, saving the day didn’t take too much.  She had to screw on part of the line that came  loose, but still, she looked the part.  She got me all cleaned up, flushed the lines appropriately and hooked everything back up.  Lisa, I hoped you liked my farewell gift as much as I liked yours 🙂

The reason you really had to be paying attention to get what Lisa did is it’s probably been 2 years since I’ve written about Cipro and calcium.  I can’t take Cipro within 2 hours of having calcium. So if Lisa had put the Cipro in with my night meds and I had taken them, I wouldn’t have been able to eat the ice cream she was bringing me.  So by putting it in with my sleeping pill, which I wouldn’t take until later, she successfully kept me from taking my cipro.  Watch out for nurses.  They are sneaky.

Radiation Oncology Consult 
I didn’t have my actual consult today because of some scheduling issues, but I did get to meet with Dr. Langer briefly.  He was a very nice guy and went over the procedure with me.  He explained all the risks of doing total body radiation, but like everyone else he recognizes the alternative to not doing it would be death, so we both decided to move forward.  I signed the consent and he sent me off to radiation simulation.  I’ll have my actual consult on 9/16 to hear more about the process and ask questions.

Simulation Terminated
Today was radiation simulation day.  Basically this was a prep session to make sure everything is in place for my radiation therapy.  As part of the SCT, I will receive radiation twice a day for 4 days.  In the morning they’ll fry my front side.  They then send me back to my room to let the glow die down.  After a few hours in my room, the send me back in the afternoon to fry my backside.  This goes on for for days until I can cook eggs by simply holding them in my hands.  My science may be a little off there, but I’m sure getting shot with a bunch of radiation has some cool side effects they haven’t told me about yet.  For now, Simulation makes me think of this scene from Monster’s Inc.  Hopefully they don’t keep any jacks on the floor in the therapy room.

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